Disclaimer

The information contained in these pages is not meant to be taken as an endorsement of any medical approach, procedure, or treatment of any kind. If you have symptoms, seek immediate professional medical attention. The topics here are presented solely as potential options to be discussed with your medical professional.

By Trisha Tester

I am a metastatic breast cancer patient. Although this means that I am almost
certainly going to die of this disease (barring a miracle), I am not a victim.
I don't like that word, and I would prefer that you never use that word around
me. I am a regular person, who happened to be standing in the wrong place at
the wrong time, and I got whacked with the cancer stick. I have noticed that
people don't always know what to say to me any more, or what to do to help.
Most people are loving, caring souls who really do want to help, but really
have no clue what I need. To try to help you help me, I have made a list. Please
keep in mind that this is purely a subjective list. I have tried to include
other viewpoints, but I don't want you to think that all things work for all
people. We are wonderfully, excitingly unique human beings. And so, of course,
our needs will be different. You will have to judge which suggestions you feel
would be appropriate, and what you would be comfortable with.

1. If I want to talk to you about what life will be like after I am dead, DO
NOT under any circumstances give me that fake, terrified, cheerful smile
and say "Oh don't talk like that. You will be fine." There is
every likelihood that I will not be fine, and it is very comforting to
me to know that you will tell stories of me to your children (and my children!!),
and will always hold me in your heart. It is incredibly comforting to
hear that you will include my children, who are much too young to lose
their mother, in your life in a much greater way than now, while I am
still here for them. You can not depress me, by acknowledging that death
is probable, or even imminent. I am all too aware of it. As a matter of
fact, if you put on that fake cheer, all you are telling me is that you
are not able to be "there" for me for my needs. If that is the
case (and I won't fault you if it is), don't even try to pretend. Just
give me a quick hug (there is nothing about me that is contagious), and
tell me you care, and skedaddle. I don't have the time to waste on fair
weather friends.

2. Don't give me the standard offer, "If there's anything I can
do for you, please don't hesitate to give me a call." Most of us
are used to being strong and capable people, who have taken care of ourselves
(and usually others) for decades. It is very uncomfortable to be in a
position of not being able to do for ourselves. I would suggest that you
drop in for a visit, pick up a broom, and sweep. Ask me if I have any
plans for dinner, and just start making it. I won't ask you to do these
things. I am not used to asking for help. I am not good at it. If it is
an emergency, I will call out for help. But if it is the little day to
day nonsense that piles up until it feels like it is going to consume
me, I will probably not ask for your help (but I will be eternally grateful
if you just come and do it). Be assertive. (But never mean!)

3. Talk about old times often. This has come as a surprise to many people
when I have suggested it to them. They say "But Aunt Nellie will
think that I think she is about to die if I talk about old times."
HELLO!! She is about to die. I am about to die (although I hope it is
prolonged by long periods of relative wellness). And I love reminiscing.
It helps me to remember fabulous times in my life that I may have forgotten.
It brings me a smile. It helps me to remember that even if my life is
cut much shorter than planned, that it has still been a good life. It
gives me a better sense of wholeness.

4. (Actually, corollary to 3.) Take some time to organize the photos
into albums. I don't know a person alive (well, maybe one) who is really
on top of their photos. Put everything else aside, and devote however
much time it takes. Get the photos in albums, with captions, and stories.
If you have a videocam, just set it up and let it go. If you just have
a tape recorder, that would be great too. Not only will your loved one
have a superb walk down memory lane, generations to come will bless you.
If I had only done this with my mother..........

5. Don't ever, ever feel guilty for enjoying life. When you find yourself
having a great time, and you happen to think of me, do not feel bad -
not even for a microsecond. Life is short. For all of us, whether we live
to be 10 or 105. Enjoy the hell out of it. I would if I were in your shoes.
Heck, I do now. My favorite cliche du jour: Your life is a bag of coins
to be spent any way you choose. But you can only spend it once. (Spend
it wisely, my friends.)

6. Don't be afraid to be afraid. If you are paralyzed with fear (and
believe me, I have been there - as has my family!) it's ok to tell me
that you are afraid that I am going to die. I am afraid too. Sharing that
fear really does in some way make it easier to handle. Denying it seems
very very false. I need real. I have no use for false. Once we have shared
the fear, amazingly enough, we can set it in back of us again and move
on. If we don't do that, it will block our paths at every turn.

7. Chances are that my bills are a pile of unorganized paperwork in a
box somewhere. Cancer is an incredibly overwhelmingly expensive proposition.
All the charges are mindboggling, and intricate. Insurance companies (in
my experience) are incompetent and potentially fraudulent bozos who screw
up all the time. I don't know if they could really be that incompetent,
or if perhaps they are encouraged to be so, hoping that you will throw
up your hands in confusion and pay some of the things that they "forgot"
to pay. At any rate, I would be enormously grateful if you would come
by some day, without judgement as to what kind of a mess I have made of
the pile, and help me straighten it out. Maybe make a few phone calls.
Maybe write a few letters. You wouldn't believe what a difference it would
make.

8. Say, "I love you" a lot. Depending on who you are, that
may come out as "You are the funniest person I have ever met,"
or "In the history of mankind, there will never be another person
as __________ as you," or simply "I love you". But this
is your chance. Don't blow it. After a certain point, there is no going
back for makeup credit.

9. Be very conservative in what perfumes/colognes you wear. Chemotherapy
often makes for incredibly sensitive olfactory senses. Perfumes can be
overwhelming and nauseating. And by the same token, be especially sensitive
if you are a smoker. (Unless the patient is a smoker - I wouldn't know
about that situation.) If you do have to smoke, please go outside. Even
if I say it is OK. And hang out outside for an extra 5 or 10 minutes to
air out. You wouldn't believe how much vile aroma clings to you.

10. Make plans, not offers. Instead of asking if I want to do lunch sometime,
ask me if next Tuesday is free. Then tell me, "Great! I will be by
to pick you up at 11 so we can go out to lunch. Maybe we could do a little
window-shopping if you are up to it." Of course, you will have to
be flexible, in case Tuesday is one of those days that I feel like I have
been run over by a Mack truck...

11. When you ask me how I am, please remember that I am much more than
my disease. I know that people ask out of concern, but I get a little
tired of reciting disease progression/regression, treatment updates, symptoms,
etc. Remember that we really did have things we used to talk about BEFORE
I got whacked. Those things are still important to me.

12. Please be aware that "looking good" has NOTHING TO DO WITH
IT. Don't worry - I even do it myself - tell my friends how good they
look as if it meant that the cancer must be under control... No such luck.
Until the very very end stages, cancer itself frequently doesn't cause
any distress at all. Usually doesn't hurt. Often you can't even feel it
(which is why so many of them go undetected for so long.) The treatments,
on the other hand, can make you want to die, even when they are saving
or (at least prolonging) your life. This doesn't mean I want you to stop
telling me I look good. I just want you to realize that it really doesn't
mean diddly-squat.

13. I need you to realize that this experience has changed me in several
ways. I am still the person I have always been, but I am different, too.
For one thing, I am tired. You know how tired you are when you are sick?
Imagine having that be your new "normal". Be sensitive to my
need to rest often. And don't expect me to be able to go as long or as
fast as I used to do. I also don't have the memory I used to. Treatment
has taken things from me that I will never get back. Now I feel like I
am slogging through marshmallow goop, both physically AND mentally. Another
change is in attitude. Some things just don't seem important to me any
more. (Hopefully, I don't yell at my kids quite as much.) And other things
have become more important. For example, I talk to strangers more often
now. When I have something to say, I say it! Don't be surprised if I start
dancing in the aisle at the grocery store. It can be a little disconcerting.
If I embarrass you, you are free to walk away and pretend you don't know
me. But please don't try to limit me. Let me spend the rest of my life
doing exactly what I want to do!

14. Don't try to shelter me from the harsh events that happen around
me. I have been omitted from too many events, because people well-meaningly
felt that I had "enough to handle". Well, I am still alive.
Even though I am fighting a war with this disease, I don't want to be
shut out of the lives around me. Which includes sharing your pains as
well as your joys. My body is failing me, but my spirit wants to support
you in whatever way I can, for as long as I can. I don't need protection
from truth.

15. Go to the doctor's appointments with me. Sometimes my poor "chemo
brain" drops important information. It is very companionable to have
someone with me in the various waiting rooms (maybe someday doctors will
operate in a timely fashion.......nah, never mind -it'll never happen!).
And it's great to have someone to talk to during an infusion drip. It
is a good idea to have a pre-written list of questions. Again, a tape
recorder can come in handy. And if the doctor is a little short or brusque,
dig your heels in and be assertive. Help me to remember that although
I am but one file in the doctor's toppling stack of workload, I am the
single most qualified protector of MY LIFE. I have every right to as much
of the doctor's time as I need. He (in my case she) certainly keeps me
waiting long enough!

16. (Actually, corollary to 14.) If I don't like the doctor's advice,
or manner, remind me that there are plenty of doctors out there, and I
deserve a second (or third....) opinion. Cancer treatment - especially
for metastatic disease, is not even close to refined yet. There is so
much "art" and doctor's judgement to it, that I should never
be coerced into a treatment I don't feel right about.

17. Respect my decision. There may come a time in this journey that I
decide to lay down beside the road and stop fighting. If I make this choice,
I know that you will be disappointed and dismayed. Maybe even furious.
Please remember that it is my battle, and my decision. I know that you
love me. I know that you want me to fight. But if that day ever comes,
please understand that there is simply no more fight left. I promise you
that I will never ever make that decision lightly.
18. If I am walking around bald from chemo, take the plunge. Shave your
head! You would be surprised how refreshing it is to stick your head under
a faucet on a hot summer day Don't worry. I will not be in the least
surprised if you "pass" on this suggestion. I can say in all
honesty, I doubt if I would do it for you!

I hope that these suggestions help you to understand what is TRULY helpful,
in dealing with a friend or loved one who is battling a life-threatening illness.
Of course, the most important thing you can do is to just be there. Listen.
Perhaps your heart will hear what needs to be said or done. Bless you for caring,
and may there be miracles enough for all of us!